Photo by Jacob Love

THE WIG PARTY 2010 is one of London’s most glamorous and exciting annual fundraising extravaganza’s for HIV. It attrracts an A-list party growd and for the first time, it is raising funds for NAT.

The glitzy, fabulous extravaganza that is the Wig Party came to life in the late 90s when a group of friends just wanted to wear a wig and indulge in some high kicking glamour for glamour’s sake.

As the years went by, the party grew by word of mouth and the Wig Party soon took on a life of its own.  Dannii Minogue said the Wig Party is: “The Most Heavenly Charity Party around.”

Tickets cost £30 and can be purchased from www.wigparty.org

IN JULY the Lib-Con Coalition published its plans for reforming the NHS in England.  While its proposals for reforming the welfare and benefits system have generated concerns from the HIV sector, there has been little comment, or information, about the ‘White Paper’ dealing with NHS reform, and more importantly, its potential impact on people living with HIV.

Positive Pulse asked Mark Platt, a leading HIV health policy advisor and independent public affairs consultant to unravel the detail and get to the bones of what are being described as the: “The most radical shake-up of the NHS since its inception.”

REFORM

In simple terms the document, ‘Equity and excellence: Liberating the NHS’, proposes a complete reform of how the NHS in England works. The document contains a number of proposals about reforming and changing the NHS, including allowing non-NHS organisations more opportunities to provide services.

However, the most radical element of the proposals, and the one that has raised the greatest interest and concern, is to hand over a large chunk of the NHS budget -  around £80 billion –  to new organisations called ‘GP consortia.’

These NEW organisations will be made up of GPs and be required to come together to form a ‘statutory body’, an organisation created by an act of Parliament and given legal responsibilities. These GP consortia, which may also have other health professionals and representatives on them, such as patient groups, will be responsible for commissioning and buying health care services for people living within a defined geographical area.

HIV CLINICS UNAFFECTED FOR NOW, BUT FOR HOW LONG?

Although HIV specific health services are unlikely to be immediately affected,  if the proposals are implemented there is likely to be some impact the future.

The white paper proposes that ‘specialist services’, the group which currently includes HIV services, will be overseen  by a new independent body called the ‘NHS Commissioning Board’.

However, a little known fact is that the number of people in the UK diagnosed with HIV now takes the condition out of the ‘specialist commissioned’ category. This means that technically it should be a condition that ‘GP consortia’ would be given responsibility for overseeing.

Since this change in numbers is recent, it is highly unlikely that this change in status will have an immediate impact on the commissioning, or provision, of HIV specialist services.

It is also certain that leading HIV organisations will lobby to retain HIV’s categorisation as a ‘specialist commissioned’ condition, and so in the event that nothing happens before, it is most likely that this will be one of the first decisions to be overseen by the ‘NHS Commissioning Board.’

CHANGE

The areas most likely to change are in ‘­primary care,’ healthcare provided by GPs and nurses, GP practices, clinics, or health centres. Under the proposals, the bodies that currently manage this part of the NHS, the Primary Care Trusts (PCT) are going to be abolished in 2013, along side the organisations that provide a regional overview for the NHS, the ‘Strategic Health Authorities’ (SHA).

It is this move from the PCTs and SHAs overseeing the NHS to GP Consortia doing the job that is likely to have the biggest impact on everyday care, the care that isn’t provided by specialist HIV clinics. In simple terms, GPs will be both payers and providers, and will have the responsibility for making sure their slice of the NHS budget is spent effectively, and that they don’t overspend.

THE GPs ROLE IN HIV CARE

One area where this might become a problem is with prescription drugs. Over the past few years GPs have been taking much more responsibility for the general care of people living with HIV. Although all HIV medications are provided by HIV clinics, most other medications are now prescribed by GPs.

Heavy users of medications are likely to be of greater concern to GPs than they are now. The question that’s being posed by many health commentators is: How can patients be sure that they’re getting the treatment that they need, and not the treatment that the GP can afford?

The GP consortia will also be responsible for commissioning hospital and clinic care, except where it falls under the definition of specialist care. They will be responsible for making sure that services that they commission, in clinics and hospitals, are good quality, safe, and cost-effective.

The cost-effectiveness of services is going to be vital, because as well as the changes proposed in the white paper, it also commits the NHS to saving £20 billion over the next four years.

POLITICAL GESTURING OR POLITICAL REALITY?

Secretary of State for Health, Andrew Lansley

All of this probably sounds very distant, and you may be thinking: What will it mean for me, as someone living with HIV? The simple answer is it’s hard to say, and the fact that the proposals are still being consulted on means that they may not be implemented anyway. Or if they are, the changes that actually happen may be very different from the current proposals.

The more complex answer requires a little bit of background. These proposals are the brainchild of the new Secretary of State for Health, Andrew Lansley. He has been waiting in to implement them for a long time, and is somewhat resistant to them being radically changed.

Although the proposals weren’t universally welcomed at first, the mood of most leading healthcare organisations, including the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP), has changed over the past three months, from: ‘They won’t work’, to: ‘How can we make them work’. So on a balance of probabilities, and failing some major political hiatus, they will probably be implemented roughly in their current form.

The next stage of the process begins when the full consultation closes on 11^th October. After that the Department of Health will examine and consider the various responses, and use them to draft a new Health Bill, which is scheduled to be presented to Parliament this autumn.

CHANGE MAY BE A GOOD THING

Many organisations will then seek to have the text amended to favour their own interests, and many MPs will also use the three stage process of passing the bill to try and change it, or even to wreck it, according to their specific party’s perspective, or their own beliefs about the NHS.

Whatever happens in the discussion and debates over the Coalition Government’s proposals over the next few months, it is very likely that healthcare in England will change, as even the Labour leadership candidates have intimated that changes will have to be made to the NHS.

Change may be a good thing for people living with HIV; it could result in better services, in better communication between HIV specialists and GPs, and in more services being provided in non-hospital settings.

However, Kieran Walshe, Professor of Health Policy and Management at Manchester Business School has warned:”large scale NHS reorganisations are huge, and the intended or projected savings from abolishing or downsizing organizations are rarely realised.”  Walshe estimates that the proposed NHS reorganisation will cost between £2bn and £3bn.

If the changes result in turmoil and remove money from the NHS, then HIV services, along with many of the other costly ‘long term conditions’ services, may feel the pinch.

ENDS

The Government’s proposals for the NHS and healthcare in the UK can be found at: www.dh.gov.uk

A Pope Nope T-shirt slogan

AS POPE BENEDICT XVI touched down in Edinburgh marking the start of a four day state visit to the UK, the  National Aids Trust (NAT) and Family Planning Association (FPA) publish an open letter condemning his papal teaching on sexual health.

The two charities site the Pope’s views on condom use and same sex relationships as: “Irresponsible and discriminatory,” and that his statements and teachings on sexuality, sexual health and well-being are putting men and women’s health and lives in danger.

The letter claims that women are being killed and injured because they could not seek legal abortions in some countries and that condoms are crucial in the fight against HIV and STI’s,

They also claim that the Pope is using his position as a head of state to “incite and legitimise intolerance, prejudice and discrimination against lesbian, gay and bisexual people.”

The open letter, follows a stream of criticism from the media on how the Vatican has handled a string of child abuse scandals that have shaken the very foundations of the Catholic Church and shocked the world.

Hundreds of people are expected to attend an anti Pope rally outside Downing Street this Saturday where speakers will include: LGBT human rights campaigner, Peter Tatchell, Richard Dawkins, science writer,  Father Bernard Lynch and Terry Sanderson, President of the National Secular Society.

Peter Tatchell, one of the organisers of the march, said: “The Pope has attacked same-sex marriages as ‘evil’ and vilified supporters of gay equality as ‘gravely immoral.’ He has also denounced homosexual equality as a ‘deviant trend’ and condemned same-sex love as being ‘without any social value.”

ENDS

Open letter from Family Planning Association (FPA) and National AIDS Trust (NAT)

We are using the Pope’s visit to the UK to highlight the discriminatory nature of his statements and teachings on sexuality and sexual health and wellbeing.

By teaching that modern contraception is ‘intrinsically evil’, the Catholic Church prevents women, including married women, from making choices about whether or not to have children, and how to plan and space their children. This leads to unwanted pregnancies, resulting in unwanted children, or abortion. Particularly in developing countries it also results in women being unable to limit the number of pregnancies during their lives, often leading to disability or premature death.

The Catholic Church’s position on abortion puts women’s health and lives in danger. Evidence from across the world and throughout history has shown that preventing women from accessing safe and legal abortion does not stop abortions. Instead, women facing unplanned pregnancies take desperate actions, including seeking illegal and dangerous abortions. Approximately 70,000 women a year die as a result of unsafe abortion and hundreds of thousands of others are severely injured and disabled.

The Pope’s teachings on abortion serve to perpetuate this situation. The Vatican has used its position in international bodies such as the UN to promote its position on contraception and abortion and to thwart progress recognising women’s sexual and reproductive rights; this impact is felt by women across the world, regardless of their faith.

We are extremely concerned about the Pope’s comments on the use of condoms, and particularly the assertion he made in March 2009 that the use of condoms increased the spread of HIV.

When used correctly and consistently male and female condoms offer protection against all STIs, including HIV. HIV remains a life-threatening illness and can be associated with significant stigma and exclusion. The use of condoms is a crucial part of the fight against the spread of HIV and it is, at best, irresponsible to oppose this.

We oppose the discrimination expressed by the Pope about same sex relationships. In 2008, the Pope used his end of year message to senior Vatican staff to argue that the world needed protecting from homosexuality in the same way it needed protecting from climate change.

As a religious leader and a head of state the Pope wields significant influence. It is unacceptable for him to use his position to incite and legitimise intolerance, prejudice and discrimination against lesbian, gay and bisexual people across the world.



MENTAL HEALTH services for people living with HIV are inconsistent in the NHS and do not meet their psychological needs, says a new report published by the National AIDS Trust (NAT).

The report – Psychological support for people living with HIV – shows a lack of adequate psychological support can have a severe impact on someone’s health and well-being and that there was evidence of higher prevalence of psychological need amongst people living with HIV.

Often, a HIV-positive patients psychological needs are overlooked because of a tendency to focus only on physical health and adherence to drug regimes, said the report.

Mark, who is living with HIV, spoke to NAT about the impact of having a mental health problem: “They reduce our immunity… If you are carrying so many things in your head there is no way you’re going to cope with your medication. So it comes back to HIV.”

Deborah Jack, CEO of NAT, said: “People can often find it difficult to come to terms with an HIV diagnosis and deal with the ongoing implications.  Psychological support can be as important for the health and well-being of someone living with HIV as going to the doctor or taking treatment. This form of support can be the crucial difference between finding every day a struggle and feeling able to cope with and enjoy daily life.

“Providing such psychological support is more cost-effective in the long-run as it means that people living with HIV can manage their condition, take treatment properly and stay healthy.  It is essential that, at this time of cuts, decisions are not made which may save money in the short-term but will increase the burden on the NHS in the long-run.”

Another person living with HIV told NAT: “I think it’s a bit of a post code lottery, really. Depends what clinic you go to and what services they have. My experience has been really good in terms of the support I’ve had. And I hear from other people that it’s not been good.”

Dr Hedge one of the experts involved in the review was concerned that attention is focused primarily on the medical management of HIV: “This is clearly essential but too narrow in focus.”

Dr Hedge made it clear that current guidance does not well serve the psychological needs of people living with HIV and that there has to be a role for stakeholders to ensure that this improves.

A spokesperson for at Abbott who funded the project said:“Mental health has become a major focus for Abbott’s HIV community engagement.  Despite the advances in and access to treatments, many people living with HIV tell us that the psychological burden of the disease significantly compromises their quality of life,” said an Abbott spokesperson.

Key findings from the NAT report include:

Evidence of higher prevalence of psychological need amongst people living with HIV compared with the general population.

HIV and mental health problems are both highly stigmatised often making people unwilling to speak out about their needs.

Psychological needs of people living with HIV are not being met consistently by the NHS.

Investing in psychological support for people with HIV will have significant benefits in the long-run for individual and public health.

ENDS

The download a copy of the report go to www.nat.org.uk

Amena Zaman, Education and Outreach Manager at CWAC

THANKS to Carla Bruni-Sarkozy and Annie Lennox, we have recently learned much about the heart-breaking plight of children born with HIV on the African subcontinent.

But what of the children born with HIV living in the UK? You might be surprising to hear that there are around 1500 children and young people known to be living with HIV in the UK.

Mercifully these days, rates of mother-to-child transmission in the UK are less than one per cent, thanks to use of antiretroviral therapy in pregnancy and protocols for managing mum and baby during pregnancy, labour and in the early months.

But there was a time, not so long ago, when UK mother-to-child transmission rates were as high as 50 per cent. Back then, many more babies were born HIV positive. Many died but some survived and against the odds have now made the transition to adolescence and adulthood.

GUARDED

I wanted to get an insight into these young people and find out what it was like to live with the virus for all your life, perhaps only becoming gradually aware of you status during their teen years. How do these youngsters cope with everyday teenage life – having to keep such a big secret at such a precious age? How do they deal with going to school, having a crush on someone or going to college and getting a job?

To get answers, I turned to Children with Aids Charity (CWAC), one of the leading organisations working with HIV-positive children and young people in the UK, offering support, guidance and advice.

On my way to meet their Education and Outreach Manager Amena Zaman at their Old Street offices, I felt nervous about intruding. This closely-protected group rarely courts attention for obvious reasons. I knew that even my HIV status would not guarantee me preferential access to this vulnerable group.

As I was guided over to Amena’s desk I was struck by the many pictures of young smiling faces covering the walls. As we made our way up to the attic to do the interview I noticed a dilapidated office server (its side panel removed) was being cooled by a fan to prevent it overheating.

Clearly this was a charity that prioritised its work before its infrastructure unlike many in the third sector today.

As we settle into the interview I notice a duck suit to one side and asked what it was for?

It turns out that Amena is not shy at coming forward when it comes to fundraising: ”I was standing outside Finsbury Park Station in that suit shaking a bucket not so long ago, actually I wore it for walk for life as well,” replies Amena we a laugh and a grin. Unaware I was hatching a plan for a photo opportunity.

DISCRIMINATION AT SCHOOL

Discrimination at school is still a big problem for HIV positive youngsters, says Amena. A young person might be advised to keep their status a secret at school for fear of recrimination and some who may not know their status are reliant on the adults around them to protect their confidentiality.

In 2008, The National Aids Trust carried out piece of work that eventually saw the Department of Children Schools and Families change its guidance and approaches to HIV in schools for both HIV positive children and HIV positive teachers. Yet stigma and discrimination persist.

“I have had various phone calls since 2008 from school teachers saying ‘It’s not fair it’s wrong, we should know a child’s status, just in case another child catches anything,’ says Amena.

“Schools often can’t cope with a child who is HIV-positive. We still get calls about children being withdrawn from schools. I got a phone call from a primary school two weeks ago saying that two children had been moved out of their school because a teacher had disclosed their status.”

“Local authorities will always save teachers that make these breaches by pleading ignorance, they say ‘we are NEW to this’ even though they have the guidelines. They will then turn round and say that the organisations that have done the guidelines have not made them clear enough.” The NAT guidelines are crystal clear.

EXCLUSION

Amena is a trained teacher with a background working in exclusion, youth work and pupil referral units. This proved useful when CWAC started getting referrals from families with complex problems

“I found quite a few teenagers had dropped out of mainstream schools as young as 14. Many were excluded for being labelled badly behaved or having challenging behaviour, but I could see that the young people presenting at the office wanted to make something of themselves and achieve something.”

“These young people living with HIV were struggling to re-enter education or to go and find work because they didn’t have the basic skills. The first thing we ask a young person when they arrive is ‘what do you enjoy doing?’ and we find a suitable course that they like, say drama, music, IT or swimming and help them to achieve.

CWAC’s education and outreach programme works with many voluntary organisations to provide work experience in safe and supported environments and has become an integral and successful part of the organisations remit.

“Outreach is something that the government needs to take note of and produce more people like Amena.”

GOING THE EXTRA MILE

On the previous day, Amena had rushed to an East End court to sit with a young HIV-positive man being sentenced.

“I attended the earlier court case and had written a letter of support for the young man’s defence lawyer. On this occasion the outcome was a good, the boy received a suspended sentence and community order.

“He gave me a big hug and said thank you. I told him it was my pleasure, urged him to stay out of trouble and gave him a tenner because I knew he didn’t have any money and needed to eat.”

Christmas is another time when Amena and her colleagues go the extra mile. One 16 year old young woman referred to CWAC after losing both parents had been moved into a council flat on her own.

“On my first visit I found her sitting in the dark eating digestive biscuit’s . Here was a girl who has just lost her mother and was completely traumatised having to deal with bereavement and loneliness. She had a real sense of loneliness and was struggling to deal with issues that even an adult would have found hard to cope with.”

Amena ended up inviting girl, now in her second year at university, to share Christmas day with her family.

This approach is important for the young people who often come from one-parent families or who have no living parents at all. Many or have a fractured sense of family or lack strong foundations.

“One thing about Amena is that I can communicate with her when I need to as she does not cut off at 5pm like most workers,” said one of the young people at CWAC.

PEER SUPPORT

The notorious CWAC duck costume makes an appearence.

CWAC ‘success stories’ are encouraged on to become role models for their younger counterparts. Amena will link older children with younger ones and pay them for providing peer support.

“A lot of the young people referred to CWAC find it difficult to open up and talk. In time they do begin to talk to their peer groups and those they trust most, such as doctors that they have built up strong relationships with.”

HOW WORK EXPERIENCE CAN REALLY WORK

Amena told me about a 17 year old girl who was viciously attacked in the playground after a lecturer disclosed her status to fellow students.

The girl came to CWAC three weeks later saying she wanted to produce a booklet to educate others and was offered the chance to update the charity’s Voices of Children booklet. The girl learned about publishing and design software and the young people got a chance to talk about being HIV-positive.

Amena then proudly showed me another leaflet written and designed by another young person who did work experience at CWAC.

“This young lady came back to see us six weeks ago she is now 24 yrs old and she has finished a degree in marketing with a 2.1. When she first arrived as a teenager at CWAC she was very troubled and had been abandoned.”

“One of the things we insist on here is that the children take full credit for their work. The young people own the work and take ownership over it,” Amena added.

Outreach has been good, because it gives me confident in things I would be afraid to do,” said one of the young people that CWAC help.

POVERTY AND DEBT

Amena spends a lot of her time worrying if her charges have eaten or if they are taking their meds. Many struggle with poverty and debt.

“It can be simple things like not having enough money to buy decent food or travel that reinforces your sense of isolation. Some can’t afford to put money on the electricity or gas key so they can’t cook it, “Amena explains.

CWAC’s hardships fund is a core part of their remit. They award small grants for essentials like washing machines, baby start-up grants, children’s clothes, shoes, winter coats etc until the age of 18.

“One young person was recently re-housed recently into permanent accommodation and she is trying to do a university course. The council have repeatedly fined her for not paying her rent.  How is a 20-year-old at full time student supposed to pay £80 on rent when she has waited six months for her student loan grant to come through? “

“Financially without CWAC I would be dead. I had no money to live: food, gas electric, no doubt about it, outreach has always helped,” another of Amena’s charges told Positive Pulse.

NOT A 9 to 5 JOB

Amena’s job might be paid 9-5, but children often call her out of hours and some needs won’t wait and making an evening hospital visit to a 22 year old in hospital who has a CD4 count below 5, is sad reality.

“I have been in hospital 3 times this year alone and each time, Amena has been there for me throughout. I have never met any other professionals that would go out of their way to do what she has done for me. It’s all about quality not quantity, that’s why Outreach is something that cannot be ignored,” said another young person.

When I asked Amena what was the most important thing these young people needed, without hesitation she leaned forward and replied: “Love, acceptance, not to be judged, the basic human right to love and receive love from people. They need to be listened to. I think we all forget we have two ears and mouth for a reason and that’s because you’re meant to listen more and talk less.”

ENDS

I would like to personally thank the young people who allowed Amena to reveal some of your personal stories. I hope that this article will go some way in helping others to understand what it may be like to be born HIV-positive. JW

HIV FACTS

• There are approximately 1500 HIV-positive children/young persons  in the UK.
• Since the beginning of the epidemic 847 children have were born HIV-positive in the UK .
• HIV is not passed on by spitting, biting, small cuts or grazes, sharing utensils or toilets seats.
• There has been no known case of HIV transmission in a school.
• According to figures compiled by the CWAC it is estimated that there are approximately 19,000 HIV-affected children living in the UK today.

To find out more about the work of CWAC or to make a donation go to www.cwac.org

You can make a direct difference on how much the UK donates to The Global Fund’s ‘Born HIV Free’ by signing the petition found at: www.bornhivfree.org

To learn more about NAT guidelines for head teachers go to www.nat.org.uk

GMFA have launched an advertising campaign to tackle the rise in Hepatitis C infections among HIV-positive gay men.

The campaign aims to raise awareness about co-infection and help HIV-positive gay men to understand how the Hep C virus is spread, how to better protect themselves and the importance of early diagnosis.

According to treatment activist group HIV i-Base, there are between 250,000 to 600,000 people in the UK living with Hepatitis C and only 55,000 have been diagnosed. That means up to 91 per cent of people with Hepatitis C may be undiagnosed.

There have been a growing number of cases of Hepatitis C infection in HIV-positive men, and much of this increase is now understood to be due to sexual transmission. If left untreated, this can lead to an increased risk of cirrhosis, liver cancer and even premature death.

Matthew Hodson, Head of Programmes at GMFA has warned that with up to a third of HIV clinics may not yet testing their patients for Hep C annually. It’s important for HIV-positive men to understand the need for them to be screened for Hep C and to request the test at their clinic.

Matthew adds: “We want to encourage HIV-positive men to ask about Hep C at their clinics and ensure they get tested for the virus. Hep C often shows no symptoms and most people who get infected will not be able to get rid of it without treatment. By getting diagnosed early, you can start treatment and stand the best chance of overcoming the virus.”

For more info about HIV and Hep C go to i-Base

For more info anout GMFA go to www.gmfa.org.uk



The now defunct charity, UK Coalition of People Living with HIV (UKC) is being investigated by the Metropolitan Police after allegations of fraud according to a news story published on thirdsector.co.uk – the Charities website.

A police spokesman told thirdsector.co.uk: “We can confirm that an allegation of fraud was made regarding the finances of a charity based in Kensington & Chelsea. Investigations are ongoing and no arrests have yet been made.”

The UKC’s former chair Bernard Forbes was unavailable for comment, however Stephen Bitti, the then UKC Chief Executive said that he was unaware of the allegations.

Former board member Philip Burns said: “I am not surprised by these recent allegations. I took the decision to stand down from the UKC board in 2005 because of my own concerns around how the charity organised its finances.”

The Vauxhall based charity closed in August 2007 amid a storm of protest after dismantling valuable services used by people living with HIV in South London. 25 people lost their jobs including a volunteer force in access of 50.

Positive Nation the UK’s leading information resource and voice for people living with HIV was understood to be sold for £3,500 despite advertising revenues in access of £230k. The magazine went on for a few years under the ownership of Sugar Media but never regained its momentum and is no longer in print.

A Charity Commission spokeswoman told thirdsector.co.uk said: “Concerns were raised with the commission regarding the UK Coalition of People Living with HIV and Aids. We considered these concerns and determined there was no regulatory role for the commission.”

ENDS